GIST (Gastrointestinal Stromal Tumor)

Size: px

Start display at page:

Download "GIST (Gastrointestinal Stromal Tumor)"

Blaze Marsh
6 years ago
Views:

1 GIST (Gastrointestinal Stromal Tumor) RESOURCE GUIDE A collection of websites that provide information and support for patients with a gastrointestinal stromal tumor and the healthcare professionals who guide them. This Resource Guide was sponsored by Novartis Pharmaceuticals Corporation.

For Any Subepithelial Mass Lesion Is GIST Part of Your Differential Diagnosis? Do you know which one is a gastrointestinal stromal tumor (GIST)? 1 2 3 4 Used with permission, Humphris JL et al.

11 heterogeneous morphology has made GIST underrecognized and misdiagnosed22 A heterogeneous morphology has made GIST underrecognized and misdiagnosed A Suspected GISTs identified by endoscopy can be

Endoscopic ultrasound (EUS) is more accurate in identifying GIST and predicting true tumor size than endoscopy Endoscopic GI tract, the muscularis propria GISTs typically originate in the fourth

displays areas not seen by endoscopy EUS penetrates the 5 layers of the GI tract and displays areas not seen by endoscopy As GISTs have malignant potential, potential33, a multidisciplinary approach

2 For Any Subepithelial Mass Lesion Is GIST Part of Your Differential Diagnosis? Do you know which one is a gastrointestinal stromal tumor (GIST)? Used with permission, Humphris JL et al. Subepithelial mass lesions in the upper gastrointestinal tract. J Gastroenterol Hepatol. John Wiley & Sons Ltd.11 heterogeneous morphology has made GIST underrecognized and misdiagnosed22 A heterogeneous morphology has made GIST underrecognized and misdiagnosed A Suspected GISTs identified by endoscopy can be further differentiated by EUS identifying GISTinand predicting size than ultrasound (EUS) is more accurate in than endoscopy identifying GISTtrue andtumor predicting trueendoscopy tumor size111 Endoscopic ultrasound (EUS) is more accurate in identifying GIST and predicting true tumor size than endoscopy Endoscopic GI tract, the muscularis propria GISTs typically originate in the fourth layer of the gastrointestinal (GI) tract, the muscularis propria GISTs typically originate in the fourth layer of the GI tract, the muscularis propria EUS penetrates the 5 layers of the GI tract and displays areas not seen by endoscopy EUS penetrates the 5 layers of the GI tract and displays areas not seen by endoscopy As GISTs have malignant potential, potential33, a multidisciplinary approach that includes a medical oncologist may help optimize patient outcomes Answers: 11 GIST GIST 22 Duplication cyst Duplication cyst 33 Carcinoid tumor Carcinoid tumor 44 Lipoma References: 1. Humphris JL, Jones DB. Subepithelial mass lesions in the upper gastrointestinal tract. J Gastroenterol Hepatol. 2008;23(4): Demetri GD. Gastrointestinal stromal tumors. In: DeVita VT Jr, Lawrence TS, Rosenberg SA, eds. DeVita, Hellman, and Rosenberg s Cancer: Practice of of Oncology. Oncology. Vol 1. 8th 8th ed. ed. Philadelphia, Philadelphia, PA: PA: Lippincott Lippincott Williams Williams & & Wilkins; Wilkins; 2008: : Principles && Practice Accessed November 17, Fletcher CDM, Berman JJ, Corless C, et al. Diagnosis of gastrointestinal stromal tumors: a consensus approach. 2002;33(5): Hum Pathol. 2002;33(5): Novartis Corporation NovartisPharmaceuticals Pharmaceuticals Corporation East Hanover, New Jersey East Hanover, New Jersey Novartis Printed in USA 10/11 GDE

3 Editorial & Production Vice President, Clinical and Scientific Affairs Jeff D. Prescott, PharmD, RPh Project Director Donna Bonura Project Manager Jaclyn Pallotti Assistant Editor Jeanne Linke Quality Assurance Editor David Allikas Art Director Ray Pelesko Sales & Marketing President Peter Ciszewski Executive Vice President, Sales Jack Lepping Vice President, Sales & Marketing Lisa Greene Vice President, Integrated Special Projects Group David Lepping Directors of Sales Scott Harwood Erik Lohrmann Senior National Accounts Manager Mike Hennessy, Jr National Accounts Managers Robert Goldsmith Corrie Payson Sales & Marketing Coordinator Megan O Connell Digital Media Vice President, Digital Media Jung Kim Web Editor Silas Inman Operations & Finance Group Director, Circulation and Production John Burke Director of Operations Thomas J. Kanzler Controller Jonathan Fisher, CPA Assistant Controller Leah Babitz, CPA Corporate Chairman/Chief Executive Officer/ President Mike Hennessy Chief Operating Officer Tighe Blazier Chief Financial Officer Neil Glasser, CPA/CFE Vice President, Executive Director of Education Judy V. Lum, MPA Vice President, Group Creative Director Jeff Brown Table of Contents 4 What Is GIST? Gastrointestinal stromal tumor, a cancer primarily found in the gastrointestinal tract, may arise anywhere along the GI tract from the esophagus to the rectum. See page 4 for more information about GIST. 5 Living With GIST Together with your healthcare team, you may be able to manage some of the associated symptoms of GIST. Turn to page 5 to learn more. 6 Patient Resources for GIST The Life Raft Group GIST Support International GIST Cancer Research Fund GIST Cancer Awareness Foundation Sarcoma Foundation of America Sarcoma Alliance American Cancer Society CancerCare Office Center at Princeton Meadows Bldg. 300 Plainsboro, NJ (609) Copyright 2012 Intellisphere, LLC. All rights reserved. 3

About 95% of people with this condition have a type of GIST that contain a protein called KIT. KIT is found on the surface of normal cells, and sends a signal that tells cells when to grow and divide.

4 What Is GIST? Gastrointestinal stromal tumor (GIST) is the most common mesenchymal neoplasm of the gastrointestinal (GI) tract. GIST may arise anywhere along the GI tract from the esophagus to the rectum. It is a disease that can occur in people of any age, though it mainly affects those over 50. Are there any causes? About 95% of people with this condition have a type of GIST that contain a protein called KIT. KIT is found on the surface of normal cells, and sends a signal that tells cells when to grow and divide. A normal KIT protein is only on when more cells are needed. In some cases, the KIT protein is abnormal and does not turn off. The result is that cells grow and divide when they are not needed, and these cells may eventually become cancerous. Are there symptoms? Patients with GIST may not experience symptoms. Doctors sometimes find GIST while performing other tests. When symptoms do occur, they can include: fatigue, abdominal pain, nausea, vomiting, loss of appetite, feeling full after eating a small amount of food, weight loss, problems swallowing, blood in the stool, and/or a mass in the abdomen that can be felt. GIST can be localized (confined to one area). GIST also has the potential to become malignant and metastasize (spread to other parts of the body). That s why it s important to work closely with your oncologist and other members of your healthcare team to help you get the best possible care. Can GIST recur? GIST can sometimes recur, which means it can come back to the original site or to other sites in the body. Your healthcare team can determine how likely a GIST is to recur by considering many factors, including a tumor s size, location, and mitotic rate (how often cells in a tumor divide), as well as whether a tumor has ruptured, spread, or invaded the mucosa (the lining of the GI tract). To learn more about GIST, visit 4

5 Living With GIST It can take time to adjust to a diagnosis of GIST, but just remember to take it one day at a time. Deciding to play an active role in managing your condition can help your adjustment to living with GIST. Surgery to remove the GIST may cause a variety of symptoms including abdominal discomfort or pain, fatigue, nausea or vomiting, and weight loss. Together with your healthcare team, you may be able to reduce the severity of these symptoms with lifestyle changes, including getting regular exercise, eating a nutritious diet, and reducing stress. If nausea and vomiting persist, ask your doctor about antinausea medications that can help control this side effect. A team approach A multidisciplinary team of healthcare specialists will work together to help you. Whether you are diagnosed with localized or metastatic GIST, you will work with a combination of specialists. This may seem a bit overwhelming, but don t be intimidated. Working closely with your healthcare team may help you feel more in control. Who is the GIST team? If your doctor suspects that you may have GIST, it s important to get a referral to an oncologist. An oncologist diagnoses and manages cancerous tumors. Your oncologist is a key member of your healthcare team and can help devise a monitoring plan. The following healthcare specialists may play a role in managing your care: Gastroenterologist - Diagnoses and treats disorders of the GI tract. A gastroenterologist will help recommend follow-up care regimens. Pathologist - Diagnoses diseases by studying tissues, cells, and bodily fluids. For GIST, pathologists study tissues from biopsies and surgeries. Surgeon - Performs many different types of surgical procedures, including, in some cases, surgery for cancer. Radiologist - Obtains and interprets medical images from scans and other tests. A radiologist may also recommend additional examinations. Oncologist - Has training in the diagnosis and management of cancer. An oncologist can help devise a monitoring plan. Surgical oncologist - Has specialized training in oncology and the removal of tumors. When GIST is localized and can be removed, a surgical oncologist may remove it, and he or she may help with management and monitoring. Endoscopic ultrasound specialist - Obtains images and information about the digestive tract using an endoscope, a long thin tube with a light and a camera. Oncology nurse - Administers care and support for patients with cancer. Your nurse will play a vital role after your diagnosis and during the monitoring of GIST. Nutritionist - Specializes in diet and nutrition; can recommend dietary modifications and create a personalized nutrition plan. The benefits of support Living with GIST can sometimes bring on many emotions, but you don t need to make the GIST journey alone. You may want to ask for help from your friends, family members, and other members of your community. You may also benefit from joining a support group for people with cancer or talking to a professional counselor. Building a network of support can make all the difference. Want to learn more? The resources in this guide may provide you with additional insight into managing GIST. Follow-up visits with your healthcare team are important To track your health over time, your healthcare team may recommend: Regular physical exams to check your overall health Blood count monitoring to look for changes that may increase your risk for anemia Some scans your doctor may order Your medical oncologist may recommend that you have the following scans performed routinely: magnetic resonance imaging (MRI), computed tomography (CT), and/or positron emission tomography (PET) help to see if the tumors have recurred or spread to other areas of the body (metastasized). Ask your healthcare team if you have questions about any of these tests. To learn more about the importance of partnering with your GIST healthcare team, go to 5

Patient Resources for GIST The following websites are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control.

6 Patient Resources for GIST The following websites are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. Novartis Pharmaceuticals Corporation makes no representation as to the accuracy or any other aspect of the information contained in these websites. The Life Raft Group Route 46 West, Suite 202 Wayne, NJ Phone: Fax: Webcasts and videos Newsletter Educational publications Support group Real-time consultation GIST Support International 12 Bomaca Drive Doylestown, PA Phone: Online form Website available in Spanish, Chinese, Italian, Hindi, and several other languages Webcasts and DVDs Educational books and brochures Downloadable booklet GIST Cancer Research Fund Tania and Robert Stutman GIST Cancer Research Fund 55 Sawmill Road New City, NY Phone: Online form Website available in 30 languages Videos from recent conferences Patient guide Support information List of financial resources 6

7 GIST Cancer Awareness Foundation 11 Palmieri Lane Staten Island, NY Phone: s: Educational brochure Links to other Internet resources Patient and family support Online newsletter News Sarcoma Foundation of America Main Street Suite 204 Damascus, MD Phone: Fax: Patient registry Newsletter Educational resources Sarcoma Alliance East Blithedale, #334 Mill Valley, CA Phone: Fax: Discussion board Peer-to-peer network Financial assistance Newsletter American Cancer Society Williams Street Atlanta, GA Phone: Online form Educational materials available in Spanish and Asian languages News Live chat line Brochures Interactive tools, quizzes, and videos CancerCare Seventh Avenue New York, NY Phone: HOPE (4673) Online workshops and podcasts Booklets and fact sheets Support groups Financial assistance Available in Spanish 7

8 This GIST Resource Guide was sponsored by Novartis Pharmaceuticals Corporation. The guide is designed to be a summary of information and not an exhaustive clinical review. Novartis Pharmaceuticals Corporation East Hanover, New Jersey Novartis Printed in USA 6/12 GDE

GASTROINTESTINAL STROMAL TUMOR. cancer that affects the digestive system

Understanding GASTROINTESTINAL STROMAL TUMOR cancer that affects the digestive system GASTROINTESTINAL STROMAL TUMOR About This Guide This guide will: Help you understand gastrointestinal stromal tumor